The Foundation for Children with Atypical HUS

Hey all--

As I am listening to Aiden ask for Macaroni and Cheese (for the second time today!) I find that it has 700mg of Sodium per serving! (this is the easy mac variety). I know that most processed foods are high in sodium but prior to our last dialysis clinic appointment they were completely unconcerned about Aiden's sodium intake saying, just let him eat whatever he wants and give Calcium Carbonate with the dairy! Now, since we are having bp probs we are having to keep an eye on sodium and you know how it goes when you try to mess with a toddler's favorite foods! I am looking for recipes for some of Aiden's faves or brand names of some that maybe y'all have used....Any help would be appreciated...I also thought this would be a great place to share all varieties of dialysis/renal healthy recipes....but they better be yummy!! :)

Aiden's Faves that I'm looking for:

Waffles
Popcorn
Hot Dogs (we can boil these to get most of the sodium out)
Mac and Cheese
Chicken Nuggets ( I can make these myself for him and cut down the sodium but just wanted to know if y'all had any good variations)
Fries (same as above)
quesadillas
Crackers (i know they have low sodium but so far he's not impressed!)

I'm sure there are others but any ideas are appreciated. He wants to eat the same things over and over and I think his bp elevation and weight gain may have been triggered by a run of "I want a hot dog, mama!"

Poor thing, he just loooooves pickles and cheetos...I keep telling him we are out! :(

Thanks!
Christy

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This is awesome topic.
Anna always been stubborn about food with sodium. We tried to get her on diet, but she will just stop eating to the point the doctor was talked about putting feeding tube in or give her more BP meds. But if she will get to the point when she will have no choice, I will have to be prepared to make something that she will take.
Our whole family loves dill food, tomatoes, cabbage and other. I will try to look and see what i can find online ;-)
UGHHH - Christy - wish I had a magic pill on this - I'll think of some - we were REALLY sodium concious back a year or so ago - been more focused on dairy lately. I know Donna had put the name of the Boar's Head hot dogs - know they are decent on sodium - I'll rack my brain and think of some stuff....
Hi, have you a dietician at your hospital? Ours is a wealth of information, she loves to share recipies and even had low sodium recipies for me at Thanksgiving because we do that holiday at our house. The tricky thing is that you not only have to look at sodium but also at preservatives like what is in bacon. It's late, i've stayed up past my bed time and can't remember the preservative that causes problems, is it potassium chloride? UGH i'll let you know when my brain is fully functioning again---did I really say full functioning? It never does that! One snack food I've found that's good is plain old corn chips, some varieties have only 90mls per serving.
Phyllis, have you tried Dairy Delicious? Nathan wouldn't dring it but some kids like it.

Phyllis Ann Talbot said:
UGHHH - Christy - wish I had a magic pill on this - I'll think of some - we were REALLY sodium concious back a year or so ago - been more focused on dairy lately. I know Donna had put the name of the Boar's Head hot dogs - know they are decent on sodium - I'll rack my brain and think of some stuff....
oops forgot also, maybe smear crackers with some type of topping, jelly? Nathan likes cream cheese. His problem has always been protien, this cheese source isn't too bad but I can't check the sodium level right now. Fries you can try some of the Mrs. Dash flavors. A lot of people around here use garlic as an alternative to sodium. Home made waffle recipies can be found on line, I tried some several years ago and they were okay. But watch the amount of baking soda it's a sodium as well. Also are grahm crackers low in sodium I haven't looked but they are topped with yummies like honey or cinnamon & sugar! We use all types of Mrs. Dash on popcorn. Nathan eats his with sweet butter and just a small amount of salt, but you could probably make popcorn balls and leave out the salt. Rice crispy treats are good too, and easy. There is also a cheese kind of like cheeze whiz that Dairy Delicious puts out, its probably lower in sodium too, we used this for a while on macoroni noodles. Dairy Delicious was developed by a nephrologist and has a web-site.
You know pickles are just cucumbers, maybe you could find a low sodium italian dressing and soak cukes in that & put it in a pickle jar!
Chrsity - On more thing -Cheryl reminded me of it - you didn't mention popcorn - not sure if Aiden is into that but Hyde LOVES and the Orville Redenbacher (or however you spell that) Heart Healthy is pretty low in sodium - also - my kids are freaks about anything with noodles and a sauce - and if it takes sour cream that's decent for potassium and phos and alot of the soups you put into stuff has a low sodium variety - be careful of low fat - usually the sodium's just higher - but with all the hear problems out there - alot have low sodium (fat may be high but that just helps our kiddos gain weight right ;-)

Cheryl Christine Pallme Biermann said:
oops forgot also, maybe smear crackers with some type of topping, jelly? Nathan likes cream cheese. His problem has always been protien, this cheese source isn't too bad but I can't check the sodium level right now. Fries you can try some of the Mrs. Dash flavors. A lot of people around here use garlic as an alternative to sodium. Home made waffle recipies can be found on line, I tried some several years ago and they were okay. But watch the amount of baking soda it's a sodium as well. Also are grahm crackers low in sodium I haven't looked but they are topped with yummies like honey or cinnamon & sugar! We use all types of Mrs. Dash on popcorn. Nathan eats his with sweet butter and just a small amount of salt, but you could probably make popcorn balls and leave out the salt. Rice crispy treats are good too, and easy. There is also a cheese kind of like cheeze whiz that Dairy Delicious puts out, its probably lower in sodium too, we used this for a while on macoroni noodles. Dairy Delicious was developed by a nephrologist and has a web-site.
You know pickles are just cucumbers, maybe you could find a low sodium italian dressing and soak cukes in that & put it in a pickle jar!
Hi Christy, Last week, Nathan & I just sat in on a "cooking class" with our pediatric dietician. All of the 5 kids ranging from 18 to 9 seemed to really enjoy it. I think they ate everything on their plates, (except Nathan but at least he tried everything!), because they helped! We had spaghetti noodles with butter, garlic and lemon juice, boiled shrimp simmered in real butter and garlic, rolls and Nathan made a dessert, with Chow Mein noodles covered in butterscotch!
I'm a bit late to this party, but wanted to echo the sentiment that a dietician at the hospital would probably be a great resource. I know, it's one more phone call, one more appointment, so another resource to consider is this one. It has links to some cookbooks and recipes online. I've spot checked them and they look pretty good--the best thing is the breakdown of how much potassium, protein, sodium, etc. is in each recipe.

The best two look like these two: http://www.culinarykidneycooks.com/ and http://www.davita.com/recipes/ but there is a link on this website to email for recipes for kids.
The Kidney Kids Cookbook
by Four Moms
To order the book contact The National Kidney Foundation of Arkansas.
P.O. Box 453
Little Rock, AR 72203
Ph. (510) 664-4343
nkfa@aristotle.net
Thanks for reminding me of the websites, Joy, I had forgotten them. We will be needing them, because the doctors have set a goal for Nathan to come off his pump feedings, Rena-Cal, Nutrin Jr. and Du-Cal by December of this year! When he started taking Nutropin, (a growth hormone), he slowly began having an appetitite for the first time since he was 11 months old, things have slowly snow-balled, and now we are hopeful he can achieve this goal!

Joy Lewis said:
I'm a bit late to this party, but wanted to echo the sentiment that a dietician at the hospital would probably be a great resource. I know, it's one more phone call, one more appointment, so another resource to consider is this one. It has links to some cookbooks and recipes online. I've spot checked them and they look pretty good--the best thing is the breakdown of how much potassium, protein, sodium, etc. is in each recipe.

The best two look like these two: http://www.culinarykidneycooks.com/ and http://www.davita.com/recipes/ but there is a link on this website to email for recipes for kids.
The Kidney Kids Cookbook
by Four Moms
To order the book contact The National Kidney Foundation of Arkansas.
P.O. Box 453
Little Rock, AR 72203
Ph. (510) 664-4343
nkfa@aristotle.net
I somehow missed out on this discussion when it was started months ago!!! We are having the same issues with Ryan. The docs have been no help, but I have been able to make Ryan more "sodium smart". I asked for help through a dietician and all I got were the same websites that Joy listed. I love the idea that Bill offered with the cooking class through the hospital. I may recommend it to ours. Ryan is a processed foods junky and I have been trying to change that and it is very hard to do. So far I haven't come up with a replacement for bologna, box mac n cheese, or chicken nuggets!!!!
I'm also looking for ideas - particularly baby foods and finger foods. All the things that are generally recommended to start with are full of potassium!
Your right about the potassium, but one of the things we learned was for example, if you soak a potato for four hours many of the nutrients leak out and what you have left is a more kidney friendly food. Carrots have been a great finger food for us also-but if it is still to hard, you may want to take baby carrots and steam them until they are soft but not soggy-it really requires thinking outside of the box...we have trouble with too much protien and low potassium, contrary to what most kidney patients experience. We have limited his meat protiens and replaced them with nuts, which are high in potassium usually, but it works for him because he "leaks" potassium! Another thing we learned is that cereals have high sodium phospates, bad in two ways, but also so does meat packed in seasonings, so the more basic the food, the better off you are. By the way, corn flakes do not have a lot of sodium phosphate.

Candace Mulcahy said:
I'm also looking for ideas - particularly baby foods and finger foods. All the things that are generally recommended to start with are full of potassium!

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CFH (Serum Complement Factor H) is a regulatory protein. The secreted protein product of CFH consists of 20 repetitive units named "short consensus repeats" or SCRs (each approximately 60 amino acids). In patients with aHUS the last 5 "pearls" in the twenty pearl strand protein, SCR16 - SCR20, should bind to protect cells but do not- they are defective in one or more of the last 5 SCR locations. If they cannot bind or stick to the kidney to protect that tissue, the platelets clump into clots that affect the glomeruli of the kidney -potentially causing acute renal failure.
  
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